Charleston, W. Va. Former Air Force Reservist Gale Reid received a letter from the Veterans Affairs Department that told her she had Lou Gehrig’s disease, and she immediately put herself through a battery of painful, expensive tests. Five days later, the VA said its “diagnosis” was a mistake.
The Montgomery, Ala., resident was among at least 1,200 veterans who received a letter about disability benefits for ALS, also known as Lou Gehrig’s disease, even though they hadn’t been diagnosed with the illness, according to the National Gulf War Resource Center. Veterans were initially suspicious of the letters, but still went through the agony not knowing exactly whether they had the fatal disease, which typically kills people within five years.
At least 2,500 letters informing veterans of disability benefits for ALS were sent out, and of those, some 1,200 were a mistake, according to the National Gulf War Resource Center. The wrongly sent letters were supposed to inform veterans of an undiagnosed neurological disorder, according to the Gulf War veterans group, which provides information, support and referrals about illnesses to veterans.
No one knows for sure exactly how many letters were mailed to veterans treated at VA hospitals and how many were a mistake. VA spokeswoman Katie Roberts didn’t return telephone messages or an e-mail Monday.
Former Army Sgt. Samuel Hargrove cried Sunday after opening his letter.
“I can’t even describe the intensity of my feelings,” said the father of two from Henderson, N.C. “With so many health issues that I already have, I didn’t know how to approach my family with the news.”
So, at first, he didn’t. Hargrove later discovered the mistake after talking with fellow veterans in the resource center and online, and he became angry.
Reid was just as upset.
“I’ve been through a week of hell, emotionally, physically and financially,” she said.
Denise Nichols, vice president of the National Gulf War Resource Center, said her group has received calls and e-mails from panicked veterans in Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming.
“Our fear was this could push somebody over the edge,” said Nichols, who was worried the news could lead already fragile veterans to commit suicide. “We don’t want that to happen.”
Jim Bunker, president of the veterans group, said he talked to someone at the VA and was told the mistake was caused by a coding error. The VA uses more than 8,000 codes for various diseases and illnesses and veterans with undiagnosed neurological disorders, which can range from mild to severe, were accidentally assigned the code for ALS, he said.
ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles.
Nichols said she suspected something was amiss because some of the veterans she knew who received the letters did not exhibit any ALS symptoms. Hargrove said he became suspicious because the letter didn’t come from his doctor, and Reid said she sought a second opinion even though she believed the letter wasn’t the right way to inform patients of a diagnosis.
The veterans groups notified the VA of the problems late last week, and the agency was in the process of calling every person who mistakenly received a letter, Bunker said.